Posts Tagged ‘Division of Developmental Disabilities’

APRIL 4, 2011 VOLUME 18 NUMBER 12My son will be 18 in a little more than a year. He is in high school, in the special education program. What do I need to do to prepare for his eighteenth birthday?

Excellent question. Assuming it is limited to legal matters (those are the only ones we’re particularly good with), we have a number of things for you to consider:

Guardianship. You may need to seek a guardianship in order to maintain your ability to make medical decisions for your son. You will undoubtedly begin hearing from all sorts of concerned (and mostly well-informed) people about how difficult and expensive that process is, and how you need to get a head start on it. Relax. The news is mostly good.

Arizona, like a number of other states, gives family members the ability to make medical decisions for an incapacitated relative. Parents have a high priority under Arizona law. Of course, if you are no longer married to your son’s other parent, that can mean a conflict over who will be first. It may be perfectly obvious to you, but the law assumes you and your ex have equal rights until a court decides otherwise — and a childhood custody order does not resolve the question.

Assuming you get along with your ex, or you are still married to your son’s other parent, does that mean no guardianship is necessary? Not exactly. There are some circumstances where it still might be appropriate to seek guardianship; you will want to consult with a lawyer who knows something about guardianship to review the concerns and options.

Some parents go ahead and file for guardianship even if it may not be completely necessary. They reason that they want the security of knowing they have legal authority, and that is not a foolish mistake. Other parents reason that they want to maintain as much autonomy and self-determination for their children as possible, despite whatever limitations they might have. That is also not a foolish point of view. What does that mean? Every family circumstance is a little bit different, and good advice is needed.

If you do decide to file for guardianship, there probably is no rush. The Arizona legislature is right now considering changes that would allow you to file before your son turns 18, but until those changes are final (perhaps by September of this year) you can’t really file until after that anyway. The process will take about six weeks, and probably cost about $1,500 to $2,000 in legal and filing fees. That assumes, of course, that it is clear that your son needs a guardian, and that he doesn’t disagree.

One thing that would help with the decision-making process, and get everything going more quickly: get a letter from your son’s physician that indicates whether the doctor thinks he can make medical and personal decisions on his own. That letter will be necessary for the permanent hearing anyway, and it will help us counsel you on whether and how to proceed.

Child Support. Is there an old child support order requiring your ex to pay you monthly? Arizona permits child support to continue past age 18 if the child is disabled. You need to jump on this issue right away.

One caveat: child support (whether it is paid to you, directly to your son or to someone else on his behalf) will probably keep him from getting Supplemental Security Income (SSI) payments — unless you plan carefully. This is not a simple issue, and few divorce lawyers have dealt with the kind of planning necessary to keep child support and SSI both coming in. We need to talk about this one at some length.

Social Security. Is your son now receiving Supplemental Security Income (SSI) payments? If not, it may be because of your assets and income, which are imputed to him for eligibility purposes. If that is the case, your assets and income will no longer count once he turns 18. If he is “disabled” (and that’s different from “has a disability”) then it would be good to get that established and get SSI benefits flowing immediately.

Promptly after your son’s 18th birthday you should apply for SSI for him. If he gets it, he will automatically qualify for AHCCCS (Arizona’s Medicaid program). That will also help assure that he gets services from the Division of Developmental Disabilities (DDD) if his disability is developmental.

There are a number of things to keep in mind once your son’s SSI eligibility is set:

If he lives with you without paying rent (or paying toward the costs of his food and shelter), his SSI will be reduced by about $250 per moth (the number changes with the maximum SSI benefit rate). If that happens, you might consider charging rent as a way of increasing his benefit — but it won’t change his eligibility for AHCCCS.

In any event, it is important to get his disability established by Social Security before he turns 22. If you do, then he will probably qualify for dependents’ and survivors’ benefits under your Social Security account. That means that when either of his parents retires, his SSI may suddenly switch to Social Security (or a combination of Social Security and SSI) and he will qualify for Medicare coverage instead of (or in addition to) his AHCCCS coverage. Similiarly, upon the death of either parent his benefit will probably bump up again.

If you help your son secure employment, perhaps in a family business or other friendly and unchallenging environment, he may lose his future eligibility for Social Security benefits on your account. That might not be best for him long term. Same result if he marries — it can cut off his future dependents’ or survivors’ benefits.

Graduation. You may want to have your son graduate with his high school class. It is often a matter of pride and self-respect, and friends and family may have encouraged that perspective for years. Unfortunately, graduation might not be best for your son.

Programs offered through the school systems are often more appropriate, more easily available and better staffed than those offered to adult participants in DDD-sponsored programs. Usually students who have been identified as developmentally disabled can stay in high school until age 22; that is often in their best interests. You might talk to lawyers familiar with the local social service scene, and to parents of other children who have been through the graduation decision.

UTMA Accounts. Do you have an old Uniform Transfer to Minors Act account you (or maybe your parents) set up for your son years ago? It’s time to deal with that, too. The good news: you actually still have a couple years. Rather than ending at 18, they mostly end at age 21. But when that day arrives, the UTMA account will keep your son from receiving SSI benefits and maybe even AHCCCS. Let’s get that problem dealt with in advance.

Estate Planning. When your son was still a minor it was important that you sign a will identifying your choice for his guardian if you had died. Thank goodness you are going to make it to his majority — but the problem hasn’t gone away. You still need to do your own estate planning, or to update it if you have already done it.

Have you created a special needs trust to receive any share you intend to leave to him? Do you have life insurance, IRAs or retirement accounts, bank accounts or even real estate listing him as beneficiary? You need to get on this project right away — you are now almost two decades older than you were when you first thought about his future care.

Winifred Branning lives in Sangamon County, Illinois. She has been determined to be incapacitated, and so a guardian has been appointed to make medical decisions for her.

In February of 1996, Ms. Branning’s physicians recommended that she receive electroconvulsive therapy (ECT) as treatment of her psychiatric illness. The guardian, Gwendolyn Lewis, agreed with the physicians and wanted to approve the treatment.

Illinois law provides that a competent patient may refuse consent to ECT (or to “any unusual, hazardous, or experimental services or psychosurgery”). When a guardian has been appointed, according to the same Illinois statute:

“[the] guardian is authorized, only with the approval of the court, to provide informed consent for participation of the ward in any such services which the guardian deems to be in the best interests of the ward.”

Ms. Lewis, following the statute’s dictates, petitioned the court for approval of the treatment. The court appointed an attorney to represent Ms. Branning, and conducted a hearing less than two weeks after her petition. After the hearing (at which Ms. Branning’s attorney unsuccessfully sought the appointment of an independent psychiatrist to evaluate her need for ECT), the court ordered that the guardian could consent to the treatment.

Ms. Branning’s attorney appealed, and the order authorizing ECT was temporarily canceled pending resolution of the appeal. Meanwhile, Ms. Branning was discharged from the psychiatric hospital on March 12, less than a month after the first request for ECT, and the question of whether ECT should be administered technically became moot.

Notwithstanding the fact that Ms. Branning was already released from treatment, the Illinois Court of Appeals decided that the procedure used to gain court approval of her proposed treatment was unconstitutional. Noting that patients have a right to refuse treatment even after a guardianship (unless it can be shown that they in fact lack capacity), the court said that there was insufficient evidence of her lack of understanding to permit the guardian to override her objections. Furthermore, Ms. Branning was entitled to an independent evaluation and a meaningful hearing, at which she must have the assistance of a capable advocate (though not necessarily an attorney).

The appellate court specifically rejected the notion that Ms. Branning’s guardianship hearing itself gave her an opportunity to object to possible treatment. The court noted that wards customarily do not attend hearings, and that (at least in Illinois) a guardian ad litem or lawyer is seldom appointed. Finally, the court noted with some satisfaction that Ms. Branning was in fact released from treatment without ECT, apparently without compromising her care. In re Branning, Illinois Appeals Court, Fourth District, December 18, 1996.

Arizona’s law would likely provide a vastly different result from the Branning case. Arizona has no specific statute requiring any special approval for ECT, psychosurgery or administration of psychotropic medications. In fact, the only Arizona statute dealing with ECT forbids the Division of Developmental Disabilities from administering or approving ECT as treatment for its developmentally disabled clients.

In fact, the common practice in Arizona is for guardians to consent to ECT where appropriate, without any court involvement or approval. While ECT remains a rarely used treatment, it usually does not involve any additional legal or procedural safeguards, other than informed consent from the patient or her guardian.

Court in Phoenix challenging Arizona’s voting laws. The challenged provisions prevent people for whom guardians have been appointed from voting in state, local or federal elections.

Arizona’s Constitution provides, in Article VII, Section 2, that “[n]o person under guardianship, non compos mentis, or insane, shall be qualified to vote at any election….” Statutes adopted to implement that provision require the Superior Court Clerk to notify the County Recorder whenever a person has been “declared insane” or had a “guardian of the person and estate” appointed. Perhaps because of the archaic language of the statute, few (if any)of Arizona’s counties comply with this requirement.

Carl Pierson, a 37-year-old Globe resident, is the plaintiff in the Center’s lawsuit. Mr. Pierson is mildly retarded, and the Gila County Public Fiduciary has been appointed as his guardian. Although he registered to vote last May, his name was removed from the voter lists this month.

The lawsuit claims that denial of the right to vote to all wards in guardianship proceedings violates the 14th Amendment to the U.S. Constitution, which guarantees “equal protection” of the law to all citizens. The suit also alleges that the Arizona provisions violate the Americans with Disabilities Act, which was adopted by Congress last year, and the Voting Rights Act.

If the lawsuit is successful, the result would probably be that guardianship wards will be permitted to vote unless someone specifically challenges their capacity to understand the voting process. Estimates indicate that over 3,000 Arizona residents are under guardianship or conservatorship.

Federal Study of Abuse

The U.S. Department of Health and Human Services has announced that it will spend a million dollars on a three-year investigation of abuse, neglect and exploitation of older Americans. Funds will come from the Administration on Aging and the Administration for Children and Families; the study will be conducted by the National Center on Elder Abuse in Washington.

Fernando Torres-Gil, assistant secretary for aging of the Department, announced the study last week. He described previous studies which indicate that as many as 1.5 million senior Americans (approximately one in 20) may be victims of abuse, and speculated that the actual numbers may be much higher.

Reasons for suspected under-reporting of abuse include the shame frequently felt by victims, as well as the fact that police and prosecutors are ill-equipped to work with the elderly. Torres-Gil described elder abuse as “the hidden shame of the American family.”

Editorial

A larger question posed by Carl Pierson’s case may go unanswered. If Mr. Pierson is able to exercise the discretion involved in voting (and all indications are that he is), why does he have a guardian? If a guardian has been appointed because Division of Developmental Disabilities rules require a guardianship proceeding as a condition of providing services, shouldn’t that law be challenged first?